top of page

The invisibility of chronic illness

Updated: May 17, 2023

Hey all, I'm sorry if you are reading this as i'm guessing you or someone you love is managing a chronic illness. May 2022 last year I started my chronic illness journey and finally got diagnosed privately and properly by 10 Harley Street with a chronic embedded bladder infection/ chronic cystitis/ chronic uti, whatever you want to call it, it has been the hardest year of my life and I still don't know where and when this journey will end. I'm definitely not a pro at managing my illness, but I wanted to share as much positivity as I can with you.

Firstly, you are not useless, or to blame. I have definitely felt so much guilt managing this illness, but if a friend told you they were ill, would you judge them so harshly? I'm sure the answer would be no, so why do we do it to ourselves? Be kind to yourself and give yourself a break. Managing any kind of chronic illness is a battle, put the energy into fighting that rather than in fighting yourself.

Secondly, I have found acceptance to be a big thing for me. To try an accept that i'm ill and not able to do the same things I used to. I know that I have better more manageable days where my bladder pain is easier to deal with. I love these days! But I also try and accept that I'm gonna have really poop days and try not to get too down about it. I think acceptance is still very much something I'm working on. I have so many ideas for The Floral Trojan, but accepting one step at a time is helping me to manage things.

Thirdly, What if anything helps? The main reason I set up The Floral Trojan other than a huge desire to do something I love is that I can make arrangements and sit there with a hot water bottle or my tens machine going at the same time. I definitely over use my hot water bottle, but heat is my biggest friend. I also am really lucky that by fluke when I purchased my mum car (I had such a beautiful convertible DS3 I had to give up, sad times) I found it had heated seats. Unfortunately it's not so fun in the summer having to have hot water bottles and heated seats on, but needs must. Flowers and flower arranging for me, has been a huge lifeline in regards to my mental health and well-being. It's like a form of escapism, I get to live in a world of just flowers, lol, and oh my gosh it's lovely there. So find your coping mechanisms, whether it's heat, a music album, a tens machine, a good book etc and use it (providing it's all legal folks, lol).

Fourthly, I would recommend getting help, particularly at the beginning to help you learn how to live with chronic pain. I know the waiting lists are absolutely disgusting etc etc, but do try and reach out for professional support. Living with chronic illness brings with it so many emotions, feelings, thoughts etc and it's important you have someone non-judgemental to share it with. Don't feel ashamed we all need a lift up sometimes. There may be chronic groups on facebook etc that you can join for your condition, or physical face to face groups therefore definitely see what's about.

Fifthly, (I'm regretting to do these numbers with ly on the end, as I keep thinking is that a real word fifthly, haha). Try some pain management suggestions. Mindfulness, yoga, that breathing Hof guy, meditation etc. Now, I am a huge stress head, my brain is constantly whirling and i'm not gonna lie I struggle with relaxation stuff. Every time I try, my brain is off having another conversation about something and I forget I'm supposed to be relaxing, get annoyed with myself, try again and thus the cycle continues. One technique I have found really useful is almost to try and disassociate from the pain. I try to think of a really powerful, happy and serene memory (I don't have many, lol), but I think of this particular memory and I take myself back there to the memory and think about all the feelings and sensations associated with that moment. It is like anything it takes practice, but for some reason my brain can manage this technique and allows me to stick at it. So might be worth a go?

I wanted to also write about the invisibleness (I don't think this is a real word), but I wanted to write about how chronic illness is often invisible. I have so many people who are like "oh, you don't look ill" or "I'm glad your better." Unfortunately unless people have experienced a chronic illness they may not understand the routines and rituals you have to do just sometimes to be able to make it out of the house. I must say I really struggle with mornings, It's my worst time of the day and every morning I have to have a hot bath to ease my bladder, is this tmi! But also being on pain meds and my body fighting an infection, somedays I need more sleep. But people looking at me from the outside do not see the pain i'm in every morning I wake up or the many other issues I have. The constant trying to live with a chronic condition is draining, especially the putting the brave face on, so when people dismiss the fact that your in constant pain and the fact that your just trying to cope as best you can, it can really pee you off. There's a really good piece by Emm Roy which just rang so true with me. I would recommend googling it, it has the phrase "Sometime's monsters are invisible, and sometimes demons attack you from the inside. Just because you cannot see the claws and the teeth does not mean they aren't ripping through me. Pain does not need to be seen to be felt". If you are supporting or know someone with a chronic condition, what I think is useful is asking them how they're doing and really listen to them rather than assuming how they are.

I wanted to finish this blog with some thank you's my family have been great and I am very lucky. Of course I need to give a huge shout out to my husband who has been my absolute rock through this journey. I don't know what I did in a past life to deserve him, he really has been my volvo Labrador (inside joke).

Dr Harvey at Harley Street and the late Professor Dr Malone-Lee. Where I would be without the clinic I cannot say. The empathy and patience that Dr Harvey, 10 Harley St and the NHS LUTS clinic have is amazing and I will be forever grateful to them. Others such as CUTIC, bladder health and other chronic uti/ bladder infection campaigners, thank you for fighting the fight! Papers like the I newspaper and guardian have also been great at researching and running stories about the condition.

2 of my GP's at my Dr's surgery have been incredible Dr Cary and Dr Allen, thank you for not thinking i'm crazy and for listening.

Lastly I wanna thank my friends, a support group who probably don't realise how much they have meant to me:

My yummy Sarah (yummy is another inside joke) Thank you for your patience, understanding and just absolute awesomeness.

My lockdown Sarah (Sarah and I became friends over lockdown and bubbled up together as we both had babies at roughly the same time). The friend who turned up with a bunch of flowers and wasn't taking no as an option - we all need one of these friends. She again had the patience of a saint and gave me a lot of insight into things.

Sharon - my work colleague but now better known as a friend. Thank you for listening to the moans, panics and blubbing. I'm lucky to call you a friend.

Alison - Thank you for your patience and being there for fun playdates when I can.

Alex- my virtual friend (lol), we've never met although we only live half an hour from each other, but have formed such a strong friendship on whatsapp, that I know we'll hit it off when we do. Thank you again for having the patience of a saint! I still owe you cake!

Angie- The Stitching Genie. If you around Mattishall/Dereham area and need sewing repairs, Angie is you gal! Thank you for all the business support. I also need to thank Lily at Surlingham for her help with this business support too.

Need to give a huge big up to the Beat Crew- we all went through something very special together and I love them all dearly and will always be the best team I have ever been a part of. They are some of the most inspiring women I have ever met and will never know how much I am grateful to have them in my life.

Thank you also to anyone who has said kind words of encouragement, healing vibes etc etc. My neighbours have been so lovely and supportive and I am very lucky for where I live.

Sorry to anyone I have missed off, I do have a sieve brain!

Lastly I want to thank the 2 chronic uti groups I am part of on facebook. Embedded/chronic uti support group and Chronic UTI Women's support group. I have laughed and cried with the community on these pages. The absolute fight these warriors do on a daily basis to survive especially as so many have been dismissed for so long (finally NICE and the NHS big wigs are beginning to recognise the problem). The admins on those pages do a lot too to really promote the cause. These communities are amazing. Thank you and keep fighting warriors.

Thank you for reading!

49 views0 comments

Recent Posts

See All


bottom of page